Hi I am new

[Hollandaise]

I have Parkinsons desease since 1996 (at the age of 32), I had DBS in 2013 which resulted in a drama. I wonder if anybody knows if there is a trouble shooting clinic in Europe for people like me? It's very expensive to go to the United States . I live in the Netherlands.

[isis6361]

I know prof Bas Bloom in the Netherlands. He is a PD expert have you seen him?

[Hollandaise in reply to isis6361]

He is famous in the Netherlands but i never met him. But i think he is not specialised in DBS programming. Thanks for answering anyhow!

[soup in reply to Hollandaise]

But he'll have contacts. Have you written off the idea of coming to the UK? We are quite good too you know.

[isis6361 in reply to Hollandaise]

we are good in the UK but the programming is as per consultant. In the UK although it is don't by the PDNS this is lead by the patients consultant so it depends who looks after your Parkinsons. Who organised your DBS and are you still under them

[Hollandaise]

First of all: thanks you both for answering!

I had the dbs in the Hague and the neurologue is very estimated for her progamming skills. A lot of people say that she is the best. But she couldn t fix me. One of the electrodes is not for 100 % at the right place, but 1,5 mm off target. They said: we do not operate a second time, becuase there is a risk of loosing the benefit of the other electrode.

So i went to Belgium for a second opinion. The docter said that it was at least 2,5 mm off target and he would operate me to put a new electrode in my head. But after almost a year he said that it was a great risk and he didnt wan to do it.

Now I am in Amsterdam and they are very smart people. But is remains very difficult to find the right program for me, without side effects. Before the dbs i had no balance problemes and i could walk. A lot of people say, Parkinsons is progressive and ofcourse it s true, but the balance f.i.started right after the dbs.

So if i resume, a lot of intelligent people have studied my case but so far without results. I need somebody like Sierra Farris in the USA, a real troubleshooter,specialised in dbs problems. If there is a special clinic in the UK , i would like to know and i would consider it seriously. May be in other countries? It s not that they are not good here in Holland, but i need a real specialist in trouble shooting!

(Excuse me for my english, i am sure it is not 100% correct but i hope you understand!)